The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.
The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies.
The Foundation has invested more than $65 million to support Alpha-1 Antitrypsin Deficiency research and programs at 106 institutions in North America, Europe, the Middle East and Australia. The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.
AlphaNet, Inc. is a not-for-profit 501 (c) (3) organization with a unique patient-driven business model that pushes advocacy to a new level, through customized patient care and innovative disease management, while funding research for a cure.